Archive for February, 2013

February 23, 2013

Benja Medical Update {Learning about Seizures}

Oh my, where to even start!

I haven’t posted a Benja medical update in a while, but if you’ve been following me on Facebook you’ll have seen some of the drama.

Backing up a little, Benja had one seizure shortly after he came home from Uganda.  We took him up to Children’s hospital where he had an MRI, EEG & CT scan.  Everything looks “normal”  so they sent us home and said it was likely febrile (because of a fever).  An entire year went by with no seizures so we decided that it was febrile and didn’t think a lot more about it.

Then, out of the blue, a few months ago he had an “episode”.   I wasn’t sure exactly what it was but his arm was twitching a little bit and he was super tired.  (Now I know it was likely a seizure).  Then, Benja had his first, real seizure in a year.  We were playing in the living room when he started acting weird and then started seizing.  But it seemed like a weird seizure – he screamed and cried through the whole thing.   It lasted for about 11 minutes.  We decided to head up to the hospital.   They checked him out and then just sent us home with diastat (to stop a long seizure) and with a referral to go back to neurology for a follow up.

Neurology scheduled us for several weeks out.  We took him home and a week later he had another seizure.  This one lasted 13 minutes and did not stop when we gave him the diastat.  So we headed back to the ER, this one in our home town (the closest ER to us).   They checked him out and gave us a referral for another neurologist so we could get a second opinion.  That neurologist couldn’t get us in until after the appointment with our current neurologist but we went ahead and scheduled the second opinion anyway.

Finally it was time for the neurology appointment with his regular neurologist.  We shared everything that had been happening and the neurologist scheduled another EEG (for a month away!) and told us to start him on seizure medicine.   He gave us a script for Keppra.

A few days later he had two seizures in one day – they definitely  seemed like they were increasing.  These two were scary because the entire right side of his body seemed paralyzed after the seizure.  His face was drooping, arm/leg were like a wet noodle.  It took an hour or so for him to get back to normal.   I debated whether to take him back to the ER (I was concerned about a stroke!) but we finally got a hold of someone in the neurologists office who said it sounded like Todd’s Paralysis – a period of paralysis following a seizure.   It was scary!

Benja’s been on Keppra for 2 full weeks now and hasn’t had another seizure since.  They started him on a really low dose and we’ve been slowly upping it.  Today was the first time he had the full dose.  We’re hoping it continues to work and he won’t have to have it increased.   The Keppra seems to make him moody and uncoordinated for a few days after we up the dose but then it seems like his body gets used to it.

His second opinion neurology appointment is scheduled for next week and his EEG scheduled for the week after that.   I don’t know if we’ll find out any more than we did before but we want to cover all bases and make sure our little guy is getting the best medical care possible.  I’ll keep everyone updated!   Thank for praying for our little guy!

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February 20, 2013

Back to Shriners {Jovia Update}

Last week Jovie and I loaded her wheelchair into the bus (oh my goodness, what a blessing this bus has been!) and took a girls only road trip to Kentucky to see the folks at Shriners hospital.

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The goal of this appointment was to have our yearly check up with the orthopedic specialists, talk to the prosthetics department about what our local prosthetics clinic wanted to do and to have some adjustments made to her wheelchair.

The drive is about 4.5 – 5 hours depending on traffic and if you stop.   We made it down there in time for dinner and decided to hit up the mall and have dinner at PF Chang after we checked into our hotel.

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The next morning we headed to Shriners.  We met with the wheelchair folks and PT first.   They were all excited to see how well Jovie is now driving her wheelchair.   Some small adjustments were made on various issues that have popped up now that she’s driving it more.  They are going to be moving a few buttons she’s having trouble reaching, removing a couple all together that she doesn’t use, making the seat bigger and removing the foot rest she doesn’t need.   The battery will also be replaced since something is wrong with it and it won’t hold a charge very long.   J. was happy to show off her driving skills and drove around the playroom for a while so we could all watch and chat about how well she’s doing.

After that we headed down to meet with the doctor and the prosthetics clinic.  I was excited for the doctor to see Jovia – especially because she (the doctor) was the one who first told me last year that we should never expect Jovie to stand or walk on her own.   I couldn’t wait for her to see how much she’d changed!   Everyone came into the room together and they were all very excited to see how well she was walking and figuring out how do things.   The doctor didn’t mention her earlier predictions (and neither did I) but I’m so glad she was able to see all that Jovie can do now.

The prostethics folks were eager to chat with us particularly because we were scheduled by our prosthetics clinic here in Ohio to get Jovie fitted for stubbies this week.  We’ve been struggling with the decision of stubbies vs no stubbies for a while now.  Several people have really pushed us to try them (mostly PT’s and prosthetics folks) but at the same time I’ve seen/read about/spoken to adult congenital amputees who were all pushed into prosthetics as a child but never got much use out of them and do not use them.  The prosthetics folks at Shriners helped me decide that we are going to hold off on prosthetics for now.   There is no real benefit for her at this point to have them.  We all agreed that they might in fact harm her walking more than they would help.  She’s doing so amazingly well now that we don’t want to do anything to cause frustration or set her back.  If at some point she decides she wants them for cosmetic reasons or an issue comes up that they become a necessity we will re-evaluate then.

One other exciting thing we learned during that appointment was that there is a woman who lives a few hours away from us who was born with the same amputations as Jovia.  The folks at Shriners said their limbs/body shapes are very similar (almost identical one doctor said) and they were going to try to get us in touch with this young woman.  I’m excited and hopeful about possibly having the chance to connect Jovia with an adult who is “just like her”.   They were telling us about all the things that this young woman does on her own (apparently she is learning to drive!) and I would love for J. to have that connection.  So we’ll see.  :)

Jovia is growing up and changing so much.  She’s almost potty trained now, talking like crazy, walking everywhere, hopping (which is so cute to watch) drawing well with markers/pencils, building towers with blocks (the physical therapists love that!), helping to clean up her toys, eating almost all of her meals on her own, driving her own wheelchair into church and appointments, helping to buckle her own carseat (she can snap the chest strap!) working on climbing up stairs (ohh, so scary for this mama!) and so much more.   She and Mayer have been playing really well together – playing pretend (restaurant is a current favorite), playing with cars, hiding in forts and whispering.  It is so adorable to see their relationship changing and maturing.  She’s recently taken on a “big sister” role with Benjamin too – comforting him when he cries, watching out for him and sounding the alert when he’s into something he isn’t supposed to be (which happens a lot now a days!) and in general acting very motherly towards him.

{Side story!  Yesterday we were sitting in the living room when I heard Jovia say “I help you Benji….” she rolled over to him and put out her arm like we do when we go to help him stand up (he can’t yet stand without holding onto something or someone).  So you have to picture this –  Jovia laying on the floor on her stomach.  Benjamin taking her arm and standing up beside her, but of course he’s all bent over because he’s holding her arm which, even when she reaches it up, is beside his ankle because she’s on her stomach.    At this point Jovie says “come on, Benj” and she tries to roll, while he tries to walk, bent over, beside her.  They fall down.  At this point I jump up, racing to find my camera as they attempt it again.  I can’t find my phone anywhere.  Finally I find it and run back to the living room where the whole thing was over.  It was so adorable and funny and sweet.   If it happens again I will try so hard to get it on video. :) }

We are so proud of our sweet girl!

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February 19, 2013

Happy 8th Birthday Finn!

Our sweet Finn is 8 years old!!

I will never forget picking him up from Haiti when he was a tiny little 10 month old guy.

I stood outside the airport in Port-au-Prince and they handed him to me over the fence so I could turn right around and make my return flight home.  Just like that, I had my first brother!

He’s grown so quickly, too quickly.  The time has just flown by!

Happy birthday Finn!  We love you!!!!

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February 5, 2013

Some interesting statistics…

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February 3, 2013

Brotherly Love….

Benja really loves his brother.  :)  

Benja & Mayer playing in the box. from sister haiti on Vimeo.